Author: Jamie Bannister

Your Service, Your Rights workshops are being delivered across Australia by a team of almost 30 facilitators from Inclusion Australia’s member organisations.

The workshops are running to talk with people with an intellectual about rights when getting NDIS services.

We recently got an update from Matt and Callum from Parent 2 Parent in Queensland about how they used art in their workshops.

Art from the Margins Workshops by Callum and Matt

Your Service, Your Rights is a project that we have been working on.  At the workshops in February and March 2023 we asked people to explain using different ways of drawing.

We had a large piece of paper on the table. We asked people to draw pictures about the things that we were talking to them about.

They used different colours, they sketched, scribbled, doodled and wrote notes using different markers, pencils, crayons and pens. Some people had help from their Support Workers.

We did this because some writers think that drawing helps people to listen and learn.  It also helps some people to relax when they are in big groups.

When people draw, they often get more ideas.

It can also help people to feel good about their drawings when we share them. This happened during these workshops.

Below are some examples of the pictures, with words written:

“There is creativity in all of us, but it can be buried beneath our everyday concerns.” – Phillipa Stanton

We think it is great to see the creative ways that people asked questions and talked about their rights in Queensland. To hear more stories from the team at Parent 2 Parent, please visit https://p2pqld.org.au/blog/

If you are interested in having workshops in your service, you can contact the Inclusion Australia member in your state or territory here: www.inclusionaustralia.org.au/your-service-your-rights-workshops/

To find out more about Your Service, Your Rights visit our project page on the Inclusion Australia website: www.inclusionaustralia.org.au/project/your-service-your-rights/ 

The disability community has been very clear for many years, “nothing about us without us.”

This means that more organisations want to work with people with disabilities when they do projects or research.

Many people who do research want to talk to people with an intellectual disability to find out what they think.

However, it can be hard to find out about these opportunities until it is too late.

Inclusion Australia has a new Easy Read monthly bulletin to help people with an intellectual disability to find out about new projects.

This might include doing interviews, surveys, or workshops.

We have made this information so you can find out about chances to have your say. In some cases, you may also be paid for sharing your ideas and your lived experience.

Our latest bulletin is below. Please share this with others who may be interested.

• Download: Consultation Opportunities - May 2023 (PDF)
• Download: Consultation Opportunities - February 2023 (PDF)
• Download: Consultation Opportunities - January 2023 (PDF)

Information for organisations, researchers and consultants

Making sure you have accessible information about your project is an important first step to engaging with people with an intellectual disability.

We have developed guidance to help you think about your project in an accessible way and prepare the information we need to be able to share it with others.

We have also developed a form to help you describe your project in an accessible way. PDF and Word versions are available.

If you would like to contact us about working together, or to feature your work in future bulletins, please contact [email protected]. Fees apply.

• Download: Working with People with an Intellectual Disability - Guide for Researchers (PDF)
• Download: Guidance for Researchers - Project Information Form (PDF)
• Download: Guidance for Researchers - Project Information Form (Word)

As we approach the end of 2022, the public engagement phase of the Disability Royal Commission (DRC) is drawing to a close, with the final date for all submissions set for 31 December 2022.

People with disability, families, advocates and representative organisations worked for many years to advocate for a Royal Commission to address violence, abuse, neglect and exploitation of people with disability in Australia.

Since the DRC was set up in April 2019, a considerable amount of work has been done both within the DRC and across the disability community – despite significant disruption caused by COVID-19.

The DRC has cast its lens across an extensive domain to shine a light on the widespread issues of violence, abuse, neglect and exploitation about which people with disability, advocates and organisations have spent many years calling for justice.

At the same time Disability Representative Organisations (DROs) have worked tirelessly to represent the experiences of people with disability, respond to submission requests, provide expert advice and to support others to share their stories with the Commissioners and their team.

While we acknowledge their significant progress so far, we believe several areas remain unexamined in the Royal Commission’s public work or require further inquiry to make specific recommendations.

In response, national DROs have worked together to provide a joint submission to the DRC outlining gaps in the scope of work undertaken to date and issues that require further examination. It includes suggestions for a deeper look into critical areas such as:

• Employment and financial security
• Inclusive homes and communities
• Safety rights and justice
• Personal and community support
• Education and learning
• Health and well being
• Community attitudes

Our joint submission supports the vital work to date of the Royal Commission and offers further advice and input to inform the recommendations that will follow in 2023.

In the years to come, these recommendations will be a vital tool in our advocacy for Australian society to fully uphold the human rights of all people with disability in accordance with the Convention on the Rights of Persons with Disabilities. We ask for the Royal Commission to ensure that the settings, structures, and contexts we identified are adequately interrogated.

It is only with the continued collaboration, co-design and cooperation between government, disability service providers, DROs and people with disability that this critical opportunity to enhance the human rights of all people with disability in Australia will achieve its full impact.

Download our joint submission here: DRO Joint Submission to DRC on identified gaps – November 2022

Local businesses are being urged to hire people with an intellectual disability – a move that would not only strengthen their businesses but also help lift many local people out of poverty.

The call comes as the world marked International Day of People with Disability on 3 December.

Our CEO, Catherine McAlpine, said many people with an intellectual disability often face huge barriers to getting good, quality jobs. For many the only option is Australian Disability Enterprises (ADEs) – also known as sheltered workshops – where some people are paid as little as $2.50 an hour.

“As a society, we often ignore the fact that too many people with an intellectual disability and their families are being forced into poverty because they can’t get access to a decent job with decent pay,” Ms McAlpine said.  “With the right support, people with an intellectual disability can and do work, and in a time of significant staff shortages, they are an untapped supply of workers.  As a community we have a responsibility to do what we can to get people with an intellectual disability into decent paid work and our local businesses can lead the charge.”

Ms McAlpine said that while the Australian Government has a responsibility to support people with an intellectual disability to find and keep work, and to break down the systemic barriers keeping people out of good quality, well paid jobs, local businesses have a role to play too.

“The time is right for a public conversation about the employment inequity facing people with an intellectual disability. Hiring people with an intellectual disability is a win for everyone – it’s good for business, good for the workers themselves, good for their families and good for the community as a whole.

“Most businesses have the ability to hire people with an intellectual disability. We need to stop making excuses and start finding ways.

Sonia Hume is a project officer at Inclusion Australia and a person with an intellectual disability. She has worked in ADEs in the past and knows the importance of clearing the path to allow people with an intellectual disability to get access to decent jobs on decent pay.

“Everyone, whether they have a disability or not, deserves to have the right to equal pay,” Ms Hume said.”

Listen to Catherine’s interview with Stephen Cenatiempo from 2CC talk radio in Canberra about employment on Monday 5 December here.

We are writing a report to the Disability Royal Commission and the Australian Government about employment for people with an intellectual disability.

This report is called a submission.

We want to tell them what needs to change so more people can get jobs they like and be paid properly.

The voices and expertise of people with an intellectual disability and their families are really important to this work.

We want you to tell us about your experiences of work.

We want you to tell us what has been good and bad about your work.

We have made a survey so you can tell us what you think.

Here is an online survey for people with an intellectual disability: https://www.rixeasysurvey.org/kiosk/alq3

Here is an Easy Read download version of the survey: ADE experiences of employment Easy Read survey

Here is a survey for families of people with an intellectual disability: https://forms.gle/uJsmjGk1f7XxawK69

Please complete the survey by 2 February 2023

Thank you to People with Disability Australia and another organisation for giving us the money to do this work.

On Friday 18 November, members of the Inclusion Australia Policy Team were invited to speak to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS).

The Committee monitors and reports on the implementation, performance, governance, administration, and expenditure of the NDIS.

As part of this work, the Committee is talking to people about the Capability and Culture of the National Disability Insurance Agency (NDIA). This includes looking at how the NDIA works and how that affects people with disability and NDIS participants trying to access information, support and services.

Inclusion Australia wrote a submission to the Committee in October 2022.  This included feedback from the Our Voice Committee members. They have been talking to people with an intellectual disability around Australia about the NDIS. They talked to self-advocacy groups, peer meetings, friends, and people they work with about what is working with the NDIS and what needs to change.

The Committee invited representatives from Inclusion Australia to talk in person about our submission and to ask some more questions.

Maeve Kennedy, Senior Manager Policy and Projects, and Luke Nelson, Policy Officer and Our Voice representative for Victoria, met with the committee members in Melbourne. They included Senator Kerrynne Liddle and MPs Dr Monique Ryan, Libby Coker and Alicia Payne.

(L-R) Dr Monique Ryan MP, Libby Coker MP, Senator Kerrynne Liddle, Alicia Payne MP, Luke Nelson, Maeve Kennedy.

Maeve and Luke told the Committee that two of the big problems Our Voice has identified are bureaucracy and issues with information and planning. They also talked about the importance of advocacy – including self-advocacy – and the importance of supported decision making.

Speaking afterwards, Luke said “I was nervous at first but once I got started the nerves went away. I think that the Committee was listening. I certainly felt like we got a good reception.” You can read more of Luke’s account of the day below.

You can read our submission to the Joint Standing Committee here:  Submission to NDIS Joint Standing Committee on NDIA culture and capability – Inclusion Australia

‘Relax and be yourself – you’re not on trial!’ – reflections on talking to the NDIS Joint Standing Committee

My name is Luke Nelson. I am part of the policy team at Inclusion Australia.

On Friday the 18th of November myself and Maeve Kennedy went to the Stamford Hotel in Melbourne and attended the Joint Standing Committee on the NDIS to talk about issues that people have found with the NDIS. 

I went because I was part of a Supported Decision Making project for the NDIS with Inclusion Australia and I am now an Inclusion Australia Policy Officer. I also did work with Our Voice about what’s working at the NDIS and what’s not working.

There were senators and MPs on the committee. We read a prepared statement and then they asked us questions around the NDIS.

We talked about issues that people have with the NDIS. For example, how difficult it is to get to speak to anyone, and the NDIS taking a long time to get any decisions. We talked about problems with self-management. We also talked about the way how it all works at the NDIA. [People told us] that every time that you had to go to the planning meeting it was like going to a court hearing – and having to explain exactly what you need all over again. There was a discussion about supported decision making, and what that was and how it helps with the NDIS. We also talked about if self-advocacy and advocacy was funded under the NDIS, and whether that would help if it was funded.

We only had a couple of days to prepare but I had good support around me to do it. To help prepare I read a lot about what people told Our Voice in the consultation. We had to go through it and pick out what we were going to bring to the Joint Standing Committee because the hearing was about the NDIS culture. We had to pick out things that were related to that topic.

I was nervous at first but once I got started the nerves went away. I think that the Committee was listening. I certainly felt like we got a good reception. They were very easy to talk to. Even though it was a serious thing, they didn’t make it feel too serious, they just let us have a conversation. So that was good.

I think they were surprised at some things we said, for example, when people told us that the NDIA doesn’t feel like a welcoming environment; it doesn’t feel like people with disabilities are welcome there. I think that sort of shocked them but hopefully they will go away and think about what we said. I think we got the message across.

I have spoken to different committees in the past, like reference committees with people with disabilities on them and disability professionals but nothing in terms of Senators and stuff like that.

If I was giving advice to someone who had to speak in front of a committee to help them prepare, I would say ‘relax and be yourself – you’re not on trial!’

Make sure that you read your notes properly. It helps to prepare by reading what you’re going to say, practicing a few times around what you’re going to say so that you don’t forget. I enjoyed it. It was nerve wracking but a great learning experience.

The experiences of people with disability with guardianship and substituted and supported decision making will be the focus of a Disability Royal Commission public hearing beginning Monday 21 November.

Inclusion Australia welcomes this hearing as an opportunity to talk about the rights of people with a disability to participate in decision-making to the greatest extent possible, and to interrogate the ways that the current systems undermine this right.

Support for decision making is a priority

The UN Convention on the Rights of Persons with Disabilities, which Australia has ratified, affirms the right of all people with disability to equal recognition before the law and says that every person should have their legal capacity acknowledged on an equal basis with others. It recognises that access to appropriate supports is an important part of this.[1]

This is far from where we currently are.

Catherine McAlpine, CEO Inclusion Australia, said “for many people with an intellectual or cognitive disability in Australia, this is not the reality. Many people are routinely denied the right to make decisions, and so have decisions made for them. Our systems entrench this. As well as increasing the risk of abuse and exploitation, this normalises the idea of substitute decision making, rather than it being a measure of last resort.”

There has been significant work exploring supported decision making and legal capacity already. Key recommendations from the Australian Law Reform Commission’s 2014 report, Equality, Capacity and Disability in Commonwealth Laws, [2] have never been implemented. This includes reforming relevant Commonwealth, state, and territory laws to be consistent with the National Decision-Making Principles [3] and establishing a Commonwealth decision making model. The report recognises that equitable and supported decision making is also fundamentally relevant to other legislation, systems, and programs, including health and social security.

Ms McAlpine said, “The Royal Commission now has an opportunity to build on the ALRC’s important work and ensure implementation of reforms that would make a real difference to the lives of people with an intellectual disability.”

Inclusion Australia and our members have long advocated for better support for people with an intellectual disability to make their own decisions. [4] Our 2021 submission to the National Disability Insurance Agency [5] reports on feedback from people with an intellectual disability and highlights the barriers many people face. This includes making sure the NDIS includes the time and costs involved in building people’s capacity to make decisions.

Ms McAlpine stated, “We call on the Government and NDIA to invest in targeted programs which increase the understanding and skills of decision makers and their supporters. Such training should be co-designed and led by people with disability.”

Inclusion Australia’s Our Voice committee provides advice to the organisation’s board and comprises people with an intellectual disability from across Australia. Our Voice members say, “people with disabilities have the right to make decisions big and small about their lives. This means everyone with a disability and every decision. If we need help, we need good help from people who know us well.”

Pressures for substitute decision making are increasing

Inclusion Australia and our members have heard many stories of pressures on people with an intellectual disability and their families to apply substitute decision making or guardianship. Administrative needs are commonly quoted, and there is strong pressure from some service providers.

Ms McAlpine said, “We heard from one family member last week that they were unable to even book an allied health appointment for their son without showing they had power of attorney. They couldn’t get past the receptionist.”

“However, there is little publicly available data on guardianship, substitute decision making, and there is no nationally consistent approach to collecting and monitoring data on guardianship and intellectual disability. This includes the reasons why guardianship is applied,” said Ms McAlpine.

“We call on the Disability Royal Commission to make recommendations around data collection that will increase our understanding.”

Understanding of supported decision making rights and practice must be embedded across our disability service system, and others. This includes access to capacity building for individuals and decision supporters, like family and friends.

Ms McAlpine said, “It is critical to ensure substitute decision making rulings are specific and only applied where needed, and that they are time limited. It is also essential that they are built on the foundation of will, preferences, and rights.

Where an individual requires significant support for decision making, guardianship may be part of the response, but this must centre the individual’s rights and wherever possible be led by their will and preferences.”

“Inclusion Australia strongly believes that guardianship should be a genuine response of last resort and encourages the Disability Royal Commission to think deeply about what is best for people who need urgent action to escape violence or avoid unsafe and harmful environments,” said Ms McAlpine.

“Even with additional investment in supported decision making, it is likely there will still be a role for guardianship for some time – until there are better alternatives for people to escape from violence, abuse, and the control of others.”

People with disability need clear options now to be able to leave situations of violence, abuse, neglect, and exploitation – even when they do not choose to.

In the interim, urgent investment is needed to strengthen human rights approaches within the current guardianship model.

One example is the current lack of resources and support for people appointed as Guardians. Once appointed there is little guidance on good practice or responsibilities. There is an urgent need for such training and information which draws on the concepts of ‘will, preferences and rights’ articulated in the UN CRPD. This training must draw from the experiences of, and be co-designed and co-delivered with, people with disabilities.

We also need to recognise the different impacts, experiences, and pressures on First Peoples and people from culturally and linguistically diverse backgrounds. Individualist decision making approaches are not always appropriate for community cultures, and more work is required to design systems and ensure practice is culturally safe, appropriate, and equitable.

We applaud the Disability Royal Commission for dedicating this public hearing to decision making and guardianship. It is vital that people with disabilities have this opportunity to publicly share their lived experience of the current models. We hope that the Commissioners will recognise the urgent need to address the current approaches to decision making in their recommendations.

Public hearing 30: Guardianship, substituted and supported decision making will run from 21- 25 November at the Novotel Sydney Olympic Park, NSW

For more details visit: https://disability.royalcommission.gov.au/rounds/public-hearing-30-guardianship-substituted-and-supported-decision-making

__________

[1] See Article 12 – Equal recognition before the law, https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-12-equal-recognition-before-the-law.html

[2] ALRC Report 124, https://www.alrc.gov.au/publication/equality-capacity-and-disability-in-commonwealth-laws-alrc-report-124/

[3] Principle 1: The equal right to make decisions; Principle 2: Support; Principle 3: Will, preferences and rights; Principle 4: Safeguards.

[4] See recent edition of our newsletter, Including Everyone.

[5] https://www.inclusionaustralia.org.au/submission/submission-to-the-ndia-on-support-for-decision-making/

Further Reading

• Inclusion Australia’s submission to the NDIS on Support for Decision making, 2021
• Inclusion Australia’s omnibus submission to the Disability Royal Commission
• Disability Royal Commission Supported Decision Making and Reform Roundtables
• Inclusion Australia’s Make Decisions Real project
• My Life My Choices project – CID and SACID: My Life My Choices

• Download: Inclusion Australia Disability Royal Commission Guardianship Statement - November 2022 (PDF)
• Download: Inclusion Australia Disability Royal Commission Guardianship Statement - Easy Read (PDF)

Hi, my name is William. I have recently started in my role as Coordinator for Your Service, Your Rights at Inclusion Australia.

Your Service, Your Rights is a project about sharing information with people with an intellectual disability about their rights when getting NDIS services.

We are also sharing information with services about how to include people in making sure their services are safe and good quality.

The project is funded by the NDIS Commission.

An important part of the workshops is talking about the NDIS Code of Conduct so that people know what they can expect from their services.

We also talk about advocacy and who can support people to speak up to their services or the NDIS Commission.

Your Service, Your Rights workshops are being delivered by Inclusion Australia’s member organisations across Australia. This includes DDWA in WA, SACID in South Australia, Speak Out in Tasmania, VALID in Victoria, CID in NSW, and P2P in QLD.

The workshops are facilitated by people with an intellectual disability and their colleagues. Each state has fantastic people doing the work and we catch up every month to reflect on how that is going in our Facilitator Network.

My job is to coordinate the facilitator network. These meetings are a place for the group to share their experiences about how the workshops are going, what has worked for people before and sharing helpful tips with each other.

I also make resources and put things into easy read to support people with delivery.

Hearing from the facilitators from each state also gives us the opportunity to give feedback to the NDIS Commission as we go. It has been excellent to have a great team of people who are willing to share their experiences.

I am enjoying this role because the information in the Your Service, Your Rights workshops is so important. When I first got NDIS services this information would’ve been really useful.

Everyone getting NDIS services should know they have rights and what to do if their rights aren’t being met.

William Ward-Boas – Your Service, Your Rights Coordinator

To find out more: https://www.inclusionaustralia.org.au/project/your-service-your-rights/

There was good news from the first budget under the new Australian Government with the announcement of funding for a National Centre of Excellence in Intellectual Disability Health.

The Government has committed $23.9 million over four years from 2022-23 with funding to continue beyond those four years.  This follows many years of campaigning by advocates to end health inequalities for people with an intellectual disability which mean people with an intellectual disability have a life expectancy 27 years less than people without disability.

Inclusion Australia also welcomes the Australian Government’s commitment to, and additional investment in the National Disability Insurance Scheme (NDIS) including:

• $385 million additional operational funding and a lifting of the staffing cap at the NDIA, which we hope will improve responsiveness of the NDIA to implementation challenges
• $5.8 million for an Alternative Dispute Resolution Pilot
• $21.2 million to support people and families with the Administrative Appeals Tribunal (AAT) appeals process
• a new Fraud Fusion Taskforce to address fraud and serious non-comp

Our CEO Catherine McAlpine said

“We are pleased to see these investments as a demonstration of the Government’s commitment to the Scheme’s success and sustainability. The NDIS is of significant importance to the economic wellbeing people with disability.  Funding for the Scheme is an investment in the future of people with an intellectual disability. It supports people to build their independence and explore options to be part of the workforce and the broader community. It also supports families to continue in the workforce.”

The NDIS is an insurance scheme. It drives outcomes for people with disability, including inclusion and employment, as well as reducing costs in other systems like health. Measuring cost without benefit is meaningless. We urge the Government to continue to take a broad look at the role of the NDIS and in particular its connections to other departments and other initiatives to increase the economic participation of people with intellectual disability.

Disability Employment Services – more work to be done

The budget took a more cautious approach to investment in improving employment outcomes for people with disability, with the announcement of “a phased approach” to delivering and implementing reforms to Disability Employment Services. Notably, current DES funding agreements will be extended for 2 years to 30 June 2025.

The Government announced a trial to “improve pathways into the current DES program for those without mutual obligations such as Disability Support Pension recipients and NDIS participants.” A joint taskforce will also be established, reporting to the Minister for Social Services and the Minister for Employment and Workplace Relations.

Catherine McAlpine said “We are disappointed not to see more targeted investment in improving open employment options for people with an intellectual disability. There has already been considerable consultation and work with disability advocates and the disability employment service sector over the past 18 months to identify a way forward. However, we look forward to working with new Government to make sure people with an intellectual have a voice and a role in reshaping employment pathways.”

Catherine McAlpine, CEO, Inclusion Australia, is available for media comment on [email protected] or 0419 530 524

Inclusion Australia is the national voice for people with intellectual disability and their families.